@Karen, Thanks for the link to the TIME article. The situation described in the article – where the Dr. says “I’m sorry” was one reason we chose to continue with a homebirth. Down Syndrome or not I wanted to celebrate Baby Girl’s birth and I knew our midwife would do that. (Given that the baby looked physically healthy on the ultrasound we did have our OB’s blessing for a homebirth – that would not have been appropriate had the baby had gastrointestinal or cardiovascular challenges). The issue of genetic testing definitely deserves another post. I have significant concerns about how the testing is basically standard for all pregnant women with no discussion of the risk and anxiety due to false screen-positives. I also take issue with the typical medical point of view that Down Syndrome is something to test for so that one can terminate the pregnancy. There is a definite bias towards termination. Like you said, I wish that people could make the determination of what is right for their family with the background that there were social services to support the families if they choose to continue the pregnancy but a perfect system certainly does not exist. And just as you said, testing is no guarantee that your child will be “perfect”. The old saying that being a parent is having your “heart walking around outside of your body” is so true. When you take the plunge of becoming a parent you take the risk of having your heart broken.

I am concerned that the issue of women’s right to access information that affects us and our children is crowding out the discussion of how much genetic testing ought to be available. If the right to know is more important than the ethics of determining what ought to be known, then where does the testing and information end? Just with traditional screenings for Downs? Mainly I think the issue is getting information to parents when there is still enough time to terminate the pregnancy. Sex selection is extreme but my solidly pro-choice OB is up in arms over newer tests that are available in the Internet that promise parents an accurate sex ID within the first trimester through a blood test.   If we expand testing for identifiable problems like Down’s (though as the Time article points out the amnio cannot determine the severity, only the presence), then does our society move a bit closer to complete marginalization of those whose problems were not evident at a time when their parents could have ended the pregnancy? And if testing is made available for less obvious problems but with a lower rate of accuracy do we increase the number of women enduring this terrible anxiety that you faced, not knowing until their child is born whether the baby is ok? Is that progress? In a perfect world our advanced, enlightened society would find a way to fund the services and support that families need to care for those who cannot live independently but alas that is not the case. 

I dunno, sorry to hijack your post. You write such interesting and thought provoking topics.